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Old 08-24-2013, 04:13 PM #1
crmak crmak is offline
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Join Date: Feb 2013
Posts: 19
10 yr Member
crmak crmak is offline
Junior Member
 
Join Date: Feb 2013
Posts: 19
10 yr Member
Default Getting scared--which makes it even worse!

Hi everyone. I have to apologize up front, because this is a little long.

I've taken a lot of comfort from reading the many supportive posts here. I've been essentially couch bound for the past 3 1/2 years, since the latest big stressful event knocked me off my feet..but that time I never really bounced back.
I am fortunate that I have found a neurologist who believes I have MG (ptsosis, typical extreme weakness that both recovers upon resting and is greatly increased with any stress--even good stress, decent response to Mestinon, etc.), even though I've tested negative.
My first question is, why are drs so very hesitant to give an actual diagnosis of MG? Especially since my neuro told me a good test of MG is to see if I get any relief from Mestinon, because she said the drug will not react and give relief to any other illness at all besides MG. Well, though I just started & am at 120mg per day (60mg 2x day), if I'm in a flare, which I am now, it only helps to a certain degree...a small degree. Still very noticeable that it helps, though.
So why the huge hesitance of drs to diagnose?? They already know it's a condition that typically gives false negatives. I don't get it.

Also, I'm fighting getting scared, as it creates even bigger problems. I typically get very sick (flu like, headache, worse weakness, heart pounding, etc) about 10-15 min after taking my pills each day. Usually that went away after 1-2 hrs. But now it's not going away.
I had a stressful incident about 2-3 weeks ago and, though I'd been enjoying pretty decent health (for me, anyway), it crashed me and I've not recouped since. But today was the first time I've needed help eating cereal and I basically have been so weak and nauseous...like if I push it at all I'll throw up, fall down, etc. And the worst is my throat..it's started to feel like it's weakening again, which the meds used to fix. And that scares me more than anything. It feels horrible and I'm always afraid my throat will close!

What concerns me is that these things are all worsened to the extreme lately by taking the very meds that are supposed to alleviate these symptoms. I'm afraid that my meds are making me sicker than the actual MG! Then of course I start to get scared and poof! even worse muscle & flu etc stuff.

At first I thought it was just a bad flare up caused by the stress event 3 weeks ago, but what gets me is I can have it fairly calmed down---until I take my pills, then I'm a wreck for the rest of the night.

I guess my 2nd question is, has anyone else gone through this same scenario? It's gotten so I'm scared to take my meds, and am thinking of stopping everything. Any input would be greatly appreciated.
Again, sorry for being so long winded!
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